Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

first PILLCAM test... very nervous... any advice


TaraZ

Recommended Posts

TaraZ Newbie

Scheduled to have the pillcam on Wednesday and I'm thinking of cancelling and rescheduling until after Christmas. I'm very nervous that this thing is going to get stuck and I'll end up having surgery ...

Right now I am scheduled to work a lot during the next 3 weeks because so many people are on vacation. I have been asking for more hours at work cause I need the money and they gave them to me. But I have a history of calling in sick and they don't trust me ... work is complicated but I wanted to prove I'm dependable so was planning on doing a banner job. Then I scheduled this for my day off not thinking much about it, just wanted to get it done. Now I'm sitting here reading all the horror stories of patients that had an obstruction and then emergency surgery so of course I'm now completely terrified to do this.  Even minor complications would not be good if they keep me from being able to work. Uggggg. I hate this. Also reading how the pillcam doesn't even work sometimes and might not be worth doing?

I am probably over thinking this and should just do it. My symptoms are chronic but fairly mild I think?  Symptoms include...

-loose stools (not diarrhea, just very loose) that are light brown in color and I've had this consistently (2-4 times a day) for about 1 whole year now. Have not had a regular hard stool BM in about 1 year.

-Tired!!! I am young(well 43) and fit and surf and windsurf and I even used to be a professional snowboarder. I am in very good shape but over the past 3 years I have become more and more tired. I have problems sleeping so at first I just ignored being tired. But it's gotten worse. On bad days I can do a little activity (30 minutes to an hour) of exercise and then I'm beat. That's extremely unusual for me but is happening more often.

-over the last year have experienced mild nausea after taking vitamins

-6 months of very possible DH! Started in Aug after eating gluten.

That's about it for symptoms. But hears the kicker... I have been gluten free (by choice, I know I'm crazy) for about 10 years now. So all my tests for celiac disease are coming back negative. The DH I mentioned is what started me down the road looking for a celiac diagnosis. Sorry this is such a long story. Again right now I'm just stressed about the pill cam. I'm reading about it and it's scary. I had a clean colonoscopy and then my endoscopy showed a small ulcer in my duodenum, neg biopsy of course. so next is the pillcam.  Thanks for taking the time to read this. Kinda feeling alone with all this.  

 

'


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



kareng Grand Master

I have heard from people on here that they worked well.  Never heard of any getting stuck

i don't know what your insurance situation is, but if you have met your deductible or still have " money" left to spend, it might be financially wise to get it done this year.

if you have been gluten-free for 10 years, these problems probably aren't due to Celiac disease.  It is a  good idea to find out what is wrong.

pikakegirl Enthusiast

Understand, diagnosed 2007 and was too afraid to do cam but had endoscope which showed only 2feet undamaged small bowel. Just had pill cam done. I am so relieved because I am fully healed stomach and small bowel. Also had colonoscopy which was perfect. Relieved and surprised due to hard times last ten years. Tips, clean yourself ou as directed. I have a very slow system an after cleanse it take 5 days for me to have bowel movement so I too was afraid it would get stuck but it came out exactly 12 hours later. I used a large stainless stele bowel to catch my bm I was determined to make sure it come through. Be sure to wear cotton top with elastic pants because they put this corset like thing on you that you can not take off. Bending over is hard and chore nearly impossible because the wire and box on the side can swing and knock into things. Don't want to break them. It is easy to swallow with water, I was surprised. or me knowing and seeing the pictures helped me relax and feel confident in my choices over the years of healing and facing the test was worth it but trust your feelings, you are your best advocate.

cyclinglady Grand Master

The risk for the pill camera getting stuck is extremely small.  That said, my niece was in the same position as you.  She was three days from getting on a plane to Europe with her family (including me).  I went with her on her visit.  I thought I would meet her GI.  Instead, it was for the pill camera prep.  My niece wisely chose to postpone the camera just before her huge trip.  This was a good decision because had there been any issues, her parents would have stayed home and it would have ruined (you know what I mean) the trip for the rest of us.  

She took the test the week she returned home.  The test went well, but it found that she had Crohn's Disease which was well out of reach for scopes.  She also did not have typical symptoms either.  She's glad she knows where she stands now.  

With your schedule, stress, etc., it might be wise just to postpone it.  But only you can decide as only you know your current health issues.  We knew that my niece wasn't super sick.  She might have an attack (she did on our last trip), but it was manageable.  

Even though you have been gluten free and had the other scopes, did they give you a complete celiac blood panel?  You might have thought you were gluten free, but not really.....it happens a lot!  

 

TaraZ Newbie

Thanks Everyone! I'm doing the pillcam. I think I was just stressing out reading all the bad stuff online. I decided to talk to my boss and explain my situation. It was funny... he got so uncomfortable about talking about it he just let me have an extra day off and said if I don't feel good on Friday then just let him know...

I'm still a little nervous about the pillcam getting stuck and leading to problems but I'll try to not think about that. So today is my prep day, had a light breakfast and then just clear fluids from now on until 10pm. Tomorrow I take the pill. And then I have the next day off of work which is nice so I can make sure this thing passes. Thanks again for the replys. I was going to put it off but my insurance has a big deductible and also it would be good to get this done and over with. Somethings going on with me... I'm currently losing weight for no reason and I have been eating a lot. I usually gain weight when I eat like that. This happened about 2 years ago... I got really skinny and was tired all the time, not like me at all. Never figured out why. Went to the Dr and metabolic panal was always normal, thyroid normal, Normal B vitamins. I was under a lot of stress at the time so I eventually figured that was the reason. Now I'm getting skinny again. It's just like before. Anyway thanks for reading.

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - trents replied to GlutenFreeChef's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      Blood Test for Celiac wheat type matters?

    2. - Scott Adams replied to GlutenFreeChef's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      Blood Test for Celiac wheat type matters?

    3. - Wheatwacked replied to GlutenFreeChef's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      Blood Test for Celiac wheat type matters?

    4. - jenniber replied to tiffanygosci's topic in Introduce Yourself / Share Stuff
      5

      Celiac support is hard to find

    5. - RMJ replied to TheDHhurts's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      need help understanding testing result for Naked Nutrition Creatine please

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,111
    • Most Online (within 30 mins)
      7,748

    Donald Carr
    Newest Member
    Donald Carr
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • trents
      Wheatwacked, are you speaking of the use of potassium bromide and and azodicarbonamide as dough modifiers being controlling factor for what? Do you refer to celiac reactions to gluten or thyroid disease, kidney disease, GI cancers? 
    • Scott Adams
      Excess iodine supplements can cause significant health issues, primarily disrupting thyroid function. My daughter has issues with even small amounts of dietary iodine. While iodine is essential for thyroid hormone production, consistently consuming amounts far above the tolerable upper limit (1,100 mcg/day for adults) from high-dose supplements can trigger both hyperthyroidism or hypothyroidism, worsen autoimmune thyroid diseases like Hashimoto's, and lead to goiter. Other side effects include gastrointestinal distress. The risk is highest for individuals with pre-existing thyroid conditions, and while dietary iodine rarely reaches toxic levels, unsupervised high-dose supplementation is dangerous and should only be undertaken with medical guidance to avoid serious complications. It's best to check with your doctor before supplementing iodine.
    • Wheatwacked
      In Europe they have banned several dough modifiers potassium bromide and and azodicarbonamide.  Both linked to cancers.  Studies have linked potassium bromide to kidney, thyroid, and gastrointestinal cancers.  A ban on it in goes into effect in California in 2027. I suspect this, more than a specific strain of wheat to be controlling factor.  Sourdough natural fermentation conditions the dough without chemicals. Iodine was used in the US as a dough modifier until the 1970s. Since then iodine intake in the US dropped 50%.  Iodine is essential for thyroid hormones.  Thyroid hormone use for hypothyroidism has doubled in the United States from 1997 to 2016.   Clinical Thyroidology® for the Public In the UK, incidently, prescriptions for the thyroid hormone levothyroxine have increased by more than 12 million in a decade.  The Royal Pharmaceutical Society's official journal Standard thyroid tests will not show insufficient iodine intake.  Iodine 24 Hour Urine Test measures iodine excretion over a full day to evaluate iodine status and thyroid health. 75 year old male.  I tried adding seaweed into my diet and did get improvement in healing, muscle tone, skin; but in was not enough and I could not sustain it in my diet at the level intake I needed.  So I supplement 600 mcg Liquid Iodine (RDA 150 to 1000 mcg) per day.  It has turbocharged my recovery from 63 years of undiagnosed celiac disease.  Improvement in healing a non-healing sebaceous cyst. brain fog, vision, hair, skin, nails. Some with dermatitis herpetiformis celiac disease experience exacerbation of the rash with iodine. The Wolff-Chaikoff Effect Crying Wolf?
    • jenniber
      same! how amazing you have a friend who has celiac disease. i find myself wishing i had someone to talk about it with other than my partner (who has been so supportive regardless)
    • RMJ
      They don’t give a sample size (serving size is different from sample size) so it is hard to tell just what the result means.  However, the way the result is presented  does look like it is below the limit of what their test can measure, so that is good.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.